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Post by greenguy on Sept 16, 2006 15:25:06 GMT -5
Here's a question. I am wondering if some people possibly have been cured of this and just walked away from it not knowing that there are chronic sufferers on message boards.
I have an experience that might be similar. I had a horrible bout with candida about ten years ago. I thought I would not live through the year much less live for ten more years. It took about a year but I finally got my health back in balance.
And those ten years have been fantastic. Now I realize that I have probably had candida all those ten years but I found a way to balance it in my life and still live really fully, travelling, very active, and even doing sugar and drinking in moderation.
Now of course I know that that is probably what has led to this, but one thing I know is that once I had my candida under control I never went to a support group or even thought of myself as someone suffering with candida for that matter so how could the people there know there were others who had it and weren't suffering. I also had about four acquaintances who had candida and completely beat it and are still well, yet the general consensus in support groups was that it was pretty unbeatable.
But one of the only things that gives me hope with this Morgellon's thing is that 10 years ago when I thought my life was over with an unacknowledged somewhat incurable disease (candida), I never would have thought I would have had ten of the best years of my life ahead of me. So even though I am once more taken down. I am not giving up hope that I can find a way to live with and or kick this disease's butt.
Anyone out there living with this and living well?
GG
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Post by TotallyFkd on Sept 16, 2006 15:52:38 GMT -5
Haven’t posted here in over a year, but have lurked a lot, on and off, to see what’s up. I’ve been under the treatment of my LLMD, one of the MRF medical advisors, for over 17 months now. There has been great improvement in my symptoms during this time, but I’ve still got several more months to go. Being a *longtime* undiagnosed lyme sufferer, two years was the estimate given to me for 100% recovery, and, based on my progress, I have no reason to disbelieve it. I’m still very much disabled many days. Today my scalp is sore as hell and it’s very difficult to concentrate as I type, but overall my condition has improved tremendously (was feeling pretty damn awful) since April 2005.
Hope to contribute more when I’m more able…
StillFkd… but not Totally anymore.
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Post by greenguy on Sept 16, 2006 17:00:42 GMT -5
Thanks Totally f'd,
So you would recommend getting medical treatment from a LLMD rather than trying the natural route?
Green Guy
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Post by TotallyFkd on Sept 16, 2006 17:31:30 GMT -5
I don’t have “THE” answer to that. But my doctor has treated lyme patients since the late 80’s and gotten results. Knows of Morgellons too. Seems to have a terrific reputation and is quite in demand (long waiting list!). If you’re lucky enough to have access to a professional with these qualifications, I’d say jump on it! I got my referral from MRF via this very forum in December 2004. Oral antibiotics do work when prescribed correctly.
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Post by Admin on Sept 16, 2006 17:41:51 GMT -5
Going from "totally" to "still" sounds like great improvement and we are so happy for you! I'd say it sure helps to have a decent doctor who knows what he's doing and believes in his patients.....you are very lucky to have yours.
Continued healing to you and please come back when you can, we care about you and love hearing good news.
Hugs from us all!
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Post by armstmik on Sept 16, 2006 19:52:38 GMT -5
What oral antibiotics? How much, how often? We like to know what works.
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Post by Layali on Sept 17, 2006 5:24:37 GMT -5
I am not 'cured' but I definitely have it under control and am pretty much symptom free most of the time in terms of fibres, itchiness, crawlies and energy levels. I believe I did this by following an anti candida diet very carefully for two months and using natural supplements and exercise. I did try the western medical route but doctors would not believe me and refused to treat me so apart from natural supplemets I haven't taken any medication since this started last September. Nowadays I eat 'normally' staying away from sugar and refined carbs most of the time and I take a few supplements mainly Vitamin B & C and fish oil (& chlorella when I can afford it) but if I slip up for too long with sugar, alcohol and grains the crawlies starts to come back a little and I also strugle with irritability, tiredness and depression. The fibres I haven't seen in a very long time though.
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Post by TotallyFkd on Sept 17, 2006 11:37:55 GMT -5
What oral antibiotics? How much, how often? We like to know what works. If you have a doctor caring enough, there’s a link on morgellons.org he/she can use to obtain treatment guidelines: www.morgellons.org/doctors.html or directly e-mail doctors@morgellons.org If you don't have a doctor, try contacting one of the site or forum administrators. They were good to me. Hope this helps.
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Post by abbienormal on Sept 17, 2007 7:33:06 GMT -5
Greenguy, If you are interested in the western route, may I suggest you visit www.morgellonstreatmentsteps.com My husband and I just started the protocol 3 weeks ago, so it is too soon to comment on its efficacy, but I have great faith in it. Also, many of the RX are available on the WalMart/Sam's Club and Target $4 programs. Even if the treatment doesn't work in the long run, it is better than nothing and then we can switch to the natural route (we are supplementing with many "naturals" with this protocol, by the way) and hopefully, the bacterial load will have been reduced and we can hit the remaining monsters with our rife machine and "naturals." I do have great faith in this protocol and up until now, hope has been an elusive commodity in our lives. We both have Lyme disease, Morgellons, Babesia, Epstein Barr Virus and are waiting to see if we have Chlamydia Pneuomaniae. This protocol will hit the Lyme, Morgellons and CPn. And, from what I understand, the protocol has been "tweaked" for Morgellons by a doctor who has been "on board the Morgellons train" from the very beginning. I so agree with you about feeling like one is going to die or wanting to die and not having any hope. And then, through hard work and determination, one can change one's life around whether it be with one's physical or mental health. I think one of the biggest hurdles with overcoming these diseases are the "mental health" and attitude issues. They are as devastating as the physical beatings that we take. BUT, anything is possible! There is hope. Things do change, albeit, very slowly. Thanks for making that point. I think it is very important for all of us to hear! Abbie P.S. By the way, our Lyme doctor almost completely ignores the fact that we have Morgellons. I suspect it is because she is too busy to learn about it. It pisses me off, but finding a person to "consciously" treat both the Lyme and Morgellons might require us to "move" to a state that we are not interested in living in. So I have "compromised" and I am going to try to "ignore" the doctor when she "ignores" my Morgellons. This protocol will allow me to do that. I wouldn't let a doctor's busy practice, patient load, or whatever stop me from getting well. I have to grin and bear it. In a perfect world........................
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Post by morgellonsmoe on Sept 17, 2007 7:57:25 GMT -5
I ditto what Freak posted .. I lost my family but the Morgellons barley shows up accept for an occasional legion and thats just after my 21 yr old comes over , he is very infected but the Morgies hang on me for a day or two .. the crawlies , stinging, terror have long left me through the open mind of a great GP that I found after much prayer and foot work . When my 21 yr old son finally went to my doc and said "I have this thing that no doctors know about " My doctor replied in a proud stern voice" OH I know allot about Morgellons" That is only because of a few of us morgies taught him where to look for answers not Mars rocks" Prayer works join us every Sunday at 9PM Eastern time ( stays 9pm Eastern even after the clocks change still will pray at 9PM )
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Post by godog on Sept 17, 2007 8:10:49 GMT -5
Ok, just so I am on the same page, Moe, that's 8pm Central for us Morgies here in Missouri, right?
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Post by morgellonsmoe on Sept 17, 2007 8:52:24 GMT -5
think so godog but referr to the Sunday night prayer vigil thread time zone here is hard to keep straight
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Post by itchin4answers on Nov 9, 2014 13:44:41 GMT -5
Haven’t posted here in over a year, but have lurked a lot, on and off, to see what’s up. I’ve been under the treatment of my LLMD, one of the MRF medical advisors, for over 17 months now. There has been great improvement in my symptoms during this time, but I’ve still got several more months to go. Being a *longtime* undiagnosed lyme sufferer, two years was the estimate given to me for 100% recovery, and, based on my progress, I have no reason to disbelieve it. I’m still very much disabled many days. Today my scalp is sore as hell and it’s very difficult to concentrate as I type, but overall my condition has improved tremendously (was feeling pretty damn awful) since April 2005. Hope to contribute more when I’m more able… StillFkd… but not Totally anymore.
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Post by itchin4answers on Nov 9, 2014 13:46:53 GMT -5
Here's a question. I am wondering if some people possibly have been cured of this and just walked away from it not knowing that there are chronic sufferers on message boards. I have an experience that might be similar. I had a horrible bout with candida about ten years ago. I thought I would not live through the year much less live for ten more years. It took about a year but I finally got my health back in balance. And those ten years have been fantastic. Now I realize that I have probably had candida all those ten years but I found a way to balance it in my life and still live really fully, travelling, very active, and even doing sugar and drinking in moderation. Now of course I know that that is probably what has led to this, but one thing I know is that once I had my candida under control I never went to a support group or even thought of myself as someone suffering with candida for that matter so how could the people there know there were others who had it and weren't suffering. I also had about four acquaintances who had candida and completely beat it and are still well, yet the general consensus in support groups was that it was pretty unbeatable. But one of the only things that gives me hope with this Morgellon's thing is that 10 years ago when I thought my life was over with an unacknowledged somewhat incurable disease (candida), I never would have thought I would have had ten of the best years of my life ahead of me. So even though I am once more taken down. I am not giving up hope that I can find a way to live with and or kick this disease's butt. Anyone out there living with this and living well? Living with it am well but not living.
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